“I feel pain when I see young people in wheelchairs.”

This statement appeared on an empathy test given to medical students, the Balanced Emotional Empathy Scale (BEES), presented at a Medicine and Writing conference I attended last year. The test-taker was to assign each statement with a number on a scale from +4 (highly agree) to -4 (highly disagree). This was presented as a reliable assessment of empathy.

I wrote -4 next to the statement. I do not feel pain when I see young people in wheelchairs. Nor do I feel pain when I see one using a cane or a walker/rollator. I feel a sense of kinship, compassion, respect; I have been using a cane off and on since my mid-20s, and I know how helpful it can be. I know wheelchairs aren’t objects to which people are bound; they offer freedom when legs won’t carry people where they need to go.

When I returned from the conference, I wrote “I feel pain when I see young people in wheelchairs” on the whiteboard of my Literature and Medicine classroom. I then wrote the following words: compassion, empathy, pity, sympathy—and asked my students to draw lines between them, connecting and categorizing, leading us to discuss underlying meanings. Feeling pain when seeing young people in wheelchairs, we agreed, relates more to sympathy and pity than it does to empathy and compassion. There is a gulf of difference between them.

The BEES test included statements about crying at weddings, at sad endings, and feeling uplifted by happy movies: Empathy as pity and emotional overload. And this, I have learned, has a lot to do with how empathy is defined by the medical field: It’s just too much to handle, too sad. A professional distance must be achieved. If empathy is defined as emotionalism, it’s easy to guard against, and to take refuge in the science offered in medical school. Other empathy tests rely on other metrics. According to recent studies, during medical students’ third year—the year they begin seeing patients—their empathic response drops significantly. Too often, medical professionals continue to struggle with compassion, which is why Medical Humanities programs such as the one I teach in are needed, to cultivate curiosity about the individual patient. Clinicians must maintain professional distance, it’s true; they can’t possibly absorb all the pain their patients bring to the exam room. But empathy is more than emotion; it’s understanding born out of human curiosity. Patients like me don’t want to be pitied so much as to be understood as individuals, to be respected, to be asked questions.

The desire for respect and curiosity resounded at a panel discussion organized by Rebecca Garden last March at SUNY Upstate Medical College. I joined other poets, Disability Studies scholars and activists Stephen Kuusisto, Jim Ferris, and William Peace in discussing how the perspectives offered by people with disabilities can educate medical professionals. What I came away with is how sharing individual disability experiences empowers patients, and listening to them can help clinicians strengthen the bonds of empathy.

Each of us represented a different disability acquired at different points in life, but we all shared similar observations we have made in medical settings. Together we arrived at certain ideas, not just across our own individual experiences, but through basic foundations of Disability Studies. We discussed the notion of cure as medicine’s main objective. When faced with the incurable, what can be done? “We’re sorry, there is nothing more that we can do,” Kuusisto reported, has become a standard, clichéd medical response to disability, nearly equivalent to the “avoid hot tubs” advice my neurologist offered to me when I was diagnosed with MS in the 1980s. But there is more to healing than curing. What can we as patients do? Engage their curiosity. Tell stories to help heal and build clinicians' empathy as they heal us. Ideally, we can develop partnerships with our clinicians, mutually approaching the levels of care with which we feel comfortable, gaining their respect as they gain ours.

Although MS is not curable (yet), those of us with relapsing MS are treatable, while people with more progressive forms may still feel underserved, needing empathy. I imagine all of us crave some degree of empathy from our care teams, someone curious to know what it’s like, to try to understand, to believe our symptoms, to listen. A deeper expression of empathy might bring us closer to a true sense of healing.
Tags Activism & Advocacy, Healthcare      9 Appreciate this
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Laurie Clements Lambeth, Author

Laurie Clements Lambeth’s MS diagnosis at the age of seventeen brought her to poetry. Her first book Veil and Burn (University of Illinois Press, 2008) was selected for the 2006 National Poetry Series. Currently at work on her second poetry collection and a book of creative nonfiction about MS, she also teaches in the Medicine and Society program at the University of Houston, where she earned MFA and PhD degrees in Creative Writing. To learn more about her work, please visit www.laurieclementslambeth.com

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  • Eleanor ODonnell   Jul 16, 2013 10:45 AM
    I really enjoyed your description of empathy. As a 78 yr. old retired P.T.with decades of living with MS that's all I ever wanted. Pity never, respect and an attempt to understand just as I tried to understand their effort.
  • David Bruce-Casares   Jul 16, 2013 10:57 AM
    YES! Empathy is vastly different from pity, which can actually be self-serving for the pitier.
  • Johan   Jul 16, 2013 11:44 AM
    Wow. Pretty sweet stuff Laurie. I like it. And not like sugar sweet, like Denzel Washington sweet. I’m a 44 year old diagnosed (April 2012) with secondary progressive MS. I think it’s more like PPMS. The nurse practitioner of the Dr. who diagnosed me agrees with me. As my mom says, “Whatever.” I use a cane. I can’t tell you how sweet it is to run into your post. I agree with the -4 by the way, me too. Thank you for the post. Keep up the good work.
  • Jenifer   Jul 16, 2013 12:17 PM
    I have MS, relapsing/premiering. I have always has a huge amount of empathy for all people less fortunate, I truly believe it has a lot to do with my MS? I just wanted to put it out into the Universe? Thanks for listening
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    A_J_  Jul 16, 2013 1:12 PM
    Agree! Don't want sympathy, appreciate empathy...hate needing to use a walker, electric cart, cane and wheelchair, except the latter in the airport becaise I go the front of the security line, and know I'd never get to the gate without it. You made some excellent points, thank you!
  • Alisa   Jul 17, 2013 8:17 AM
    MS is so different for each individual. It is one bizarre disease. Diagnosed 12/18/09. That date will forever be burned on my brain, no pun intended. Never wanted pity. Just understanding and empathy. It took a good 3 years before I could really wrap my brain around the fact that I have MS and there is no cure. Very tough pill to swallow. However, I just ran 8 miles in 84 degrees with high humidity. My MS is very mild but who knows what the future holds. Uncertainty is the hallmark of MS.
  • Susan Reinhard   Jul 17, 2013 12:10 PM
    Thank you for this blog. it's so helpful.
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    HannahFTW  Jul 17, 2013 1:11 PM
    As a young person with MS, I was diagnosed at 19. I am now 26 and have progressed from using a cane to using a wheelchair when going long distances. I couldn't agree more with this article. I see people giving me these sad stares of "I feel sorry for that young girl in the wheelchair" all the time. Its incredibly frustrating for me. Personally, my wheelchair isn't a prison, its the one thing that lets me get out and enjoy life again without being in pain. My wheelchair is my freedom. I don't want pity or sympathy. I want understanding! Thanks for sharing this topic, as it often goes without understanding the disabled person's perspective.
  • Nancy   Jul 18, 2013 3:21 PM
    I have just discovered this site. Your blog made me want to comment right away which is not really like me. I have PPMS dx in 2009 when I was 61. Not the usual. Last winter I purchased a transport chair because I can't walk distances....frustrating. In order to feel better about having to accept this, we named my chair "Wilma". She has been very helpful to my independence. I have been pleasantly surprised at how people are so respective when they see me. I notice because I'm still uncomfortable having to use it. BTW, my grand kids love Wilma.
  • wjpeace   Jul 19, 2013 8:45 AM
    I love the line "there is more to healing than curing". I would speculate that most physicians struggle when they meet a patient with a disability because the power dynamics are fundamentally different. A person with a disability that has thrived has more expertise than the physician and is quite content to direct his or her care. Add in the fact cure is of no interest and another level of complexity exists. Thus Rebecca Garden's panel discussion become of great importance in teaching all how to navigate the relationship we have with health care providers. Given this, it was a pleasure to participate.
  • Avatar
    Renee_Blessed  Jul 25, 2013 10:53 AM
    I really enjoyed reading your article. MS is the disease where it takes to no one. I was diagnosed February of 2012 ,however I believe I've had MS since my early 20's and I'm now 44 years old. When I was first diagnosed I refused to use
    any Kane or wheelchair I just walked around like a drunk. I didn't want anyone to feel pity for me. However I realize that the people who surround me were not feeling pity but empathy. My coworkers I would walk me to my car and make sure I got into my class. They would take my students 2 different areas of the building. And when I was finally bedridden for 2 months they sent my family meals. I realize the person who was feeling pity ,was me, for myself. The reason my name on this site is Renee Blessed. Is because I realize I am so blessed to be surrounded buy a loving family ,supportive friend ,and coworkers, and God's got this disease. I also see those stares from people ,but I never really cared what people thought before ,so I guess God pick the right one to give them MS to. I don't like going outside ,hate the sun, don't want to run ,and I know I'm blessed. My self esteem is very healthy.I have a red Walker and cane and I match them to my car an lips stick and they are spicy and lively like me. Thank for getting MS and all og us!